Julianne Update ... Late

First, I wanted to say that baby Lindsay is doing better. She's off of ECMO and is still on the vent. She's just resting and recovering and rebuilding her strength now. Please continue to keep her in your prayers.

21 Months

Wow! I can't believe that Julianne is 21 months old. Its hard to believe that in just 3 months our little baby boo will be 2 years old! Its just going way too fast. At 21 months Julianne is EATING (more detail later in the blog), is "all done" with everything and everyone, is learning to "ask nicely," and is sweeter and cuter everyday. She crawls, she cruises, she bear crawls, she pretends to sleep and snore, she pretends to fall down and loves to "sit down pool" (i.e. sit on the steps in the pool). Thank you for continuing this journey with us and thank you for all of your prayers for our baby girl during the last 21 months plus! God has given us more than we could ever deserve or ask for and we are so very, very thankful.



Well, we've had a lot going on recently. We made a trip to the Our Lady of the Lake ER around 10 PM Sunday. We decided to give Julianne her last feeding before she went to bed Sunday night. She gagged on the first bite and then really wasn't into eating much so we gave it up and tube fed the rest of the feeding. She cried and fussed THE WHOLE TIME. We thought she was probably just tired so we brought her to her room to go to bed, read her books and then picked her up to rock her to sleep. She fell asleep not even 30 seconds after I picked her up...which is totally not normal. So, I laid Julianne down in her bed and she immediately opened her eyes. I hurried out of the room so she wouldn't try to convince me to rescue her from her bed. About 5 minutes later I went back to check on her like I usually do and she was still awake and breathing really heavy and fast. After this went on for a little while we realized it wasn't going to go away and we called Cardiology. They had me check her respiratory rate which was 54 breaths per minute. They felt that was too fast and were concerned, as we were, that she may have aspirated some of her feeding. SO....off to the ER. By the time we got there around 10:30-ish she had a fever of 100.4. They gave her some Tylenol and as soon as the fever went down her breathing returned to normal. They did an EKG just because she was there and it was good. Everyone was satisfied with the thought this was just something viral and would play itself out in the next several days, so we went home with a promise to see Dr. Chris (pediatrician) in the morning. As it turns out, it appears that she has something...possibly a sore throat, nasal congestion issue, cold of some sort. She's been kind of gaggy during her feedings. Not gaggy/retchy gaggy, just a little gaggy. Definitely nothing like it used to be. The gagginess seems to be resolving, but now she has some sort of conjunctivitis...awesome. Dr. Chris called in a prescription for some drops and I've been putting them in since last night. Her eye is so pitiful looking. Yesterday after her nap it was 1/3 full of yellow goop. Yesterday morning it was really swollen and bloody red. Its still red, but less swollen and not so bloody red. Hopefully it will be much improved by Monday or we'll be headed back to Dr. Chris.

The Ophthalmologist appointment earlier this month went revealed some good news. Julianne's astigmatism has improved! She went from 3 diopters in February to 2 diopters now. So, she'll have her next appointment in December and if her eyes continue to improve she'll avoid glasses for now. If they haven't improved then we'll get her some super cute glasses. We're very thankful for the good news.

Julianne went to the Cardiologist and it went pretty well too. She did much better than I thought she would during the Echo. Of course she cried but I was able to get her calmed down long enough for them to get some good pictures. Dr. Crapanzano said her heart looked good! The EKG on pulse ox were good. No blood pressure was taken because she was screaming and it would not have been accurate. Julianne also had labs drawn and we should find out the results Monday. If the results are good then she'll have no more labs drawn for 6 months! YAY! The blood work is to test for liver and thyroid function. Among many others, these are some of the side effects of Amiodarone. Amiodarone can also damage the eyes over time...the vessels in the eyes to be more specific. Dr. Crapanzano said we needed to get Julianne checked by an Ophthalmologist. God must've put that thought in my mind when we were at the Ophthalmologist because I just mentioned it to the doctor and he said he saw no evidence of any damage. So, we avoided a second trip to the Ophthalmologist. Less doctor's appointments = happy Julianne. Julianne's next Cardiologist appointment will be in six months, in December. That will be her last appointment before going to Boston for the next surgery, the Fontan. Julianne will likely have her Fontan around April of next year. Ugh...I'm not ready to think about that. I can't even imagine turning her over to the surgical team again...especially as "healthy" as she is now. :(

Julianne is still eating. YAY! YAY! YAY! As I mentioned, the eating has slowed due her current cold/virus, but is still WAY-HAY-HAY better than it used to be. She had been eating ALL of the food portion of each feeding. I was just tube feeding her liquids. Now that she's not feeling well she's less consistent as far as eating all of the food, but I think that's to be expected.

First container of baby food EVER finished by Julianne!!! AWESOME!!!

Julianne is still amazing us with her speech and understanding. Her newest thing is when someone says something is cute Julianne follows it up with, "it's cute...really cute" and IT IS cute. Check out the video. Be sure to note her messy bed-head. She better learn that the camera is always rolling here...even right after you wake up. :)



We've been enjoying the Summer and so has Julianne. She's been swimming, sprinkler playing and even tasted her first snowball...wedding cake flavor of course! We've got plenty of pictures. Julianne says, "Picture you, mommy?" when she wants me to take her picture. Its pretty funny because if she's swinging or swimming she thinks we HAVE TO be taking pictures of her. If we don't she just keeps saying, "picture you, picture you, picture you." Maybe we take too many pictures...no way!

Swimming

Sprinkler-ing

Coloring

Ready for church

"Picture you, mommy?"

More fun than one baby can handle

Lindsay

My plan was to post a Julianne update tonight, but I felt like I should post for baby Lindsay instead. Lindsay had been doing AWESOME after her heart transplant. So well, in fact, that they were hoping to head home soon. Today, however, Lindsay has had a pretty tough time which resulted in her being placed on ECMO. Please pray for this little girl and her family and feel free to visit her blog. Its so scary how things can go from better than great to dire in a matter of moments...we can take comfort in knowing that no matter how quickly the situation changes, it is never out of God's control. Please keep sweet Lindsay in your prayers.

I will post a Julianne update tomorrow.

Baby Lindsay

Baby Lindsay is getting her new heart today...just 1 week before her 1st birthday! Please keep this sweet baby and her family in your prayers. Feel free to check out her blog HERE.

What a week!

I can hardly believe I'm typing this, but....


JULIANNE IS EATING!


Seriously! No Joke! Eating.

It basically happened overnight. We have been transitioning Julianne to blended foods tube feedings (we're up to 4 blended food feedings of the 5 tube feedings per day). Which consist of baby food, yogurt, formula and water (for now). I was mixing the yogurt and baby food one day and Julianne was sitting with me and getting annoyed. So, to distract her I said, "Here, have a bite" and wiped the spoon on her lips like we do all the time. Amazingly, she liked it and wanted more! So, with promises of saying her favorite praise word "Aw-aw-aw-some" if she took a bite, she ate bite after bite after bite until she finished an entire ounce of food! I thought at first that it might not continue, but it has! This started last Thursday. Its now been a week and she's up to an ounce and a half per feeding! While this is nowhere near what she needs to eat to give up the tube feedings, it is WAY more progress than we've ever made before! The great thing is that I'm not just sneaking the spoon into her mouth while she's talking or smiling. She's leaning forward, opening her mouth and then closing it on the spoon. We are thanking God for giving us this wonderful development that we've prayed for for so long!



If that wasn't good enough news...

She's tasting table food! Yup, also a brand new development. On Memorial Day Julianne decided it was a great day to start licking and tasting bread, potato salad and basically anything we put in front of her (tomatoes, cookies, crackers, chicken....anything she can pick up). She hasn't eaten any of it yet and probably isn't ready for chewing right now anyway, but she has NEVER done this before. The closest we've ever come was that we got her to lick a piece of corn...twice. This is much, much better. She even gets bits of the food on her tongue and doesn't gag!! Julianne says it best....

"Aw-aw-aw-some!"

Finally to add icing to the cake...

Julianne took two steps without holding on to anything! It was kind of a step-step-lunge toward mommy motion. :) She wasn't actually walking, but she was being brave and trying something she'd never done before (she usually just laughs and falls forward at us) and we are so proud of our baby boo!



God blessed us with a WONDERFUL, WONDERFUL week!

Now, in less than spectacular, but still noteworthy news, Julianne got a haircut. We carefully removed the mullet and gave our baby boo a respectable bob. She didn't put up too much of a fight and to make that happen I didn't work too hard to even it out. :)

Before

During

After

We've got a busy week coming up. We're heading to Lafayette for Julianne's Papa's surgery, having Occupational Therapy (which is going well, by the way) and then going to the Ophthalmologist appointment on Friday. We also finally got our pre-approval for a home loan worked out and are looking for a house more seriously now. In fact, we are looking at 4 houses tomorrow! Its kind of scary, but exciting too!

To update you on a few of our friends:

Emma Kate is healing from her surgery and is back home from Boston! Yay! Thank you so much for your prayers for our friend. :)

Sofi is still on the ventilator and is trying to regain enough strength to be extubated,. Please continue to keep this sweet girl in your prayers.

Thank you so much for checking in on our busy girl! Julianne is doing so well....we are truly amazed with every new development. We are so thankful that God has blessed us with the opportunity to love her, teach her and watch her grow and we are so grateful for our family and friends who love and pray for our baby boo.

Julianne's first trip to the Zoo!

**Emma Kate Update** Emma Kate had her surgery today and is doing well. Please continue to keep this little girl and her family in your prayers. :)

Before we get to the zoo, I wanted to show you Julianne's latest interest. Opening the door...she says she want's to "touch keys" but really she wants to mess with the doorknob. Its actually kind of a good thing. Julianne's physical therapist wants her to do more reaching up and this is the perfect activity for reaching!

Julianne took her first trip to the zoo this past Saturday. We were in New Orleans for my cousin's graduation and went to the Audubon Zoo the day after. My sister, Laura and Kent's cousin, Craig joined us for the zoo trip. Unfortunately, Julianne wasn't too impressed. She was happy riding around in her stroller though and we enjoyed looking at the animals. :)

Looking at the monkeys with Daddy

Prayers for Friends and a Julianne Update

**Update** Emma Kate's surgery is postponed due to an additional cardiac issue that wasn't found until she was examined in Boston. She will now have a catherization on Friday and surgery sometime in the days following. Please continue to keep her and her family in your prayers. :)

One of our local "heart friends", Emma Kate, headed up to Boston yesterday to undergo open heart surgery tomorrow. Emma Kate is about 2 months younger than Julianne. We know how scary it is to hand your baby over to the surgical team and we also know how the peace of God can calm those fears. Please keep sweet Emma Kate, her parents and family in your prayers.

To update y'all on Sofi, she still needs your prayers. She is still on the ventilator, but they are getting some smiles out of her now. In her parents' words, "Sofi isn’t any better, isn’t any worse… i guess thats alright. Her cardiologist was worried yesterday and is slightly more optimistic today, but she still has a very long road to recovery. She is too weak to breathe on her own at all, and is being fully ventilated."' Please continue to keep this little girl in your prayers.

We met with the dietitian last week and it went really well! We are on our way to transitioning to a blended food diet. Working with a dietitian to make meal plans will help ensure that Julianne is getting all of the nutrients she needs even though she's not getting formula. I can't tell you how excited I was to pick out baby foods! It seems silly, I know, but when you've been feeding your baby 99% formula for almost 20 months its quite enjoyable to finally pick out something new. :)

We met all of the new therapists and they seem really great! Julianne played well while they were here and they got to see the "real" (mostly) Julianne. The occupational therapist will come once a week and the physical therapist will come 3 times a quarter. Julianne will not have a special instructor this time. They felt that she is not behind on her cognitive skills and doesn't need a special instructor. That was great to hear! The occupational therapist will begin working with Julianne tomorrow.

Thanks so much for checking in on Julianne and thank you, thank you for your prayers. :)

Please forgive my failure

Sorry, I know I said I'd post on Friday, but it just didn't happen. :(

We ended up postponing the Ophthalmologist appointment due to insurance issues. Long story short, we either pay completely out-of-pocket now or pay a small co-pay after June 1st. Since this wasn't an urgent appointment (her New Orleans Ophthalmologist wasn't planning to see her back until August to talk about glasses) we postponed it until June 5th. So, we'll wait until then.

As promised, here are some new pictures and some videos!

We took Julianne to Festival International last weekend. She loves music and even looked like she was "singing along" in the video below.

"Playing my maraca while daddy, mommy and mimi eat lunch"

This was after Julianne's dress got soaked in formula

We've also been enjoying the park near my parents' house. Julianne LOVED swinging! Sliding was a different story. Be sure to check out that girl's tongue in the video!






Finally, these are just some cute pictures that I couldn't resist posting.

"Kiss daddy!"

Caught!

Close-up

Thanks for checking in on our baby boo! We have the dietitian appointment on Thursday and I should find out by the end of the week if the one of the general surgeons here in Baton Rouge will accept Julianne as a patient. We are having trouble getting one because they say we're close enough to keep her New Orleans surgeon because New Orleans is not that far away. That would certainly be a headache for us. Please pray that one of them will accept her.

For those of you who are praying for Sofi, she's doing well! Slowly but surely making progress. :)